皮肤病专用替代工具的创建及预试验结果：婴幼儿皮肤病生活质量量表
Creation and pilot test results of the dermatology-specific proxy instrument: the Infants and Toddlers Dermatology Quality of Life.
作者信息
Chernyshov P V, Boffa M J, Corso R, Pustišek N, Marinovic B, Manolache L, Salavastru C M, Tiplica G S, Kakourou T, Alexopoulos A, Nasi L, Wojciechowska-Zdrojowy M, Seniuta J, Szepietowski J C, Erkens A, Fölster-Holst R, Sampogna F, Chernyshov A V, Jemec G B, Esmann S, Mazereeuw-Hautier J, Merlos M, Tomas-Aragones L, Marron S E
机构信息
Department of Dermatology and Venereology, National Medical University, Kiev, Ukraine.
Department of Dermatology, Sir Paul Boffa Hospital, Harper Lane, Floriana, Malta.
出版信息
J Eur Acad Dermatol Venereol. 2018 Dec;32(12):2288-2294. doi: 10.1111/jdv.15229. Epub 2018 Sep 14.
BACKGROUND
Until now, there was no validated dermatology-specific health-related quality of life (HRQoL) instrument to be used in youngest patients.
OBJECTIVE
To create dermatology-specific proxy instrument for HRQoL assessment in children from birth to 4 years.
METHODS
International focus groups, item selection and pilot tests were utilized. In order to avoid the problem of cross-cultural inequivalence, focus group work and pilot tests were planned simultaneously in all national centres of the project. Comprehensibility, clarity, acceptance and internal consistency of new instrument were checked.
RESULTS
The title 'Infants and Toddlers Dermatology Quality of Life' was chosen for our new instrument with the proposed acronym 'InToDermQoL'. Focus group work was completed in seven national centres (Croatia, Germany, Greece, Malta, Poland, Romania and Ukraine). A total of 170 families of children with different skin diseases were interviewed, and a pilot version of the instrument was created. Centres from France, Denmark and Spain have joined the project at this stage. Parents of 125 children with skin diseases filled in the pilot versions of the instrument. Good comprehensibility, clarity, acceptance and internal consistency of the InToDermQoL were confirmed. The pilot test results showed that the InToDermQoL questionnaire well differentiates severity-dependent differences. It was also checked and confirmed during the pilot test that no significant information was missed in the questionnaire. Three age-specific versions of the InToDermQoL questionnaire with 10, 12 and 15 items, respectively, were approved for field tests.
CONCLUSION
The pilot test results showed that the InToDermQoL questionnaire has good comprehensibility, clarity, acceptance and internal consistency and well differentiates severity-dependent differences. Further validation of the InToDermQoL during international field test will be performed.
背景
到目前为止，还没有经过验证的、专门用于最年幼患者的皮肤病相关健康相关生活质量（HRQoL）评估工具。
目的
创建一种专门用于评估0至4岁儿童皮肤病相关HRQoL的代理工具。
方法
采用国际焦点小组、项目筛选和预试验。为避免跨文化不等价问题，在项目的所有国家中心同时开展焦点小组工作和预试验。检查新工具的可理解性、清晰度、可接受性和内部一致性。
结果
我们的新工具被命名为“婴幼儿皮肤病生活质量”，缩写为“InToDermQoL”。焦点小组工作在七个国家中心（克罗地亚、德国、希腊、马耳他、波兰、罗马尼亚和乌克兰）完成。共采访了170名患有不同皮肤病儿童的家庭，并创建了该工具的预试验版本。法国、丹麦和西班牙的中心在这一阶段加入了该项目。125名患有皮肤病儿童的家长填写了该工具的预试验版本。InToDermQoL的可理解性、清晰度、可接受性和内部一致性良好得到了确认。预试验结果表明，InToDermQoL问卷能很好地区分与严重程度相关的差异。预试验期间还检查并确认问卷中没有遗漏重要信息。InToDermQoL问卷的三个针对不同年龄的版本，分别包含10项、12项和15项，已获批用于现场测试。
结论
预试验结果表明，InToDermQoL问卷具有良好的可理解性、清晰度、可接受性和内部一致性，能很好地区分与严重程度相关的差异。将在国际现场测试中对InToDermQoL进行进一步验证。
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